I'm Home From IU Med Center..

[Kate]

AND NO RESULTS!!!!! *screams*

MY video EEG was FINE. I had no seizures while I was there. I was miserable. However.. I did get a nice case of the FLU. Which, imagine, is wonderful, hooked up to an EEG, the other stuff, etc, ON CRUTCHES (from my ankle surgery), and having to hop to the bathroom constantly. It was HECK. One of the worst weeks of my life.

I also had a HORRID allergic reaction to the tape they put on me.. which has NEVER happened before.. and they couldn't give me benadryll because it can "cause seizures" (which we never knew) so I had to deal with it.. I was SO unbearably itchy I was in tears. I know a week long EEG is going to itch, but I had rashes. It was awful. I'm still so broken out all over my forehead..

And it's SO frustrating because I feel like it was ALL for nothing!! I was fighting back tears the three hour drive home. Also trying not to throw up.. etc. *sigh* It's just not fair.

The doctor said that it's normal.. and she has had several patients have seizures and never find a cause. So for now, they are going to keep me on my medicine, and just see what happens from there. *sigh* I have an appointment back up at IU with the doc there in April to see how I'm doing. It sucks having to go three hours away and they make the appointments so early in the morning AND theres a time change we have no choice but to stay the night.. (another rant in itself lol) while I have a neurologist here, so I don't know why I'm going back there. But I'll do whatever they say.

They only GOOD news I did get.. they are allowing me to go on my trip to Europe that we have been waiting to book the tickets for since I would be flying there alone and having my big sister (from a sorority) meet me at the airport in Switzerland. I was VERY happy to get the OK on that trip. *wipes forehead*

Okay.. long long long post. Sorry! lol. That's what happens when they lock you up and make you miserable for a week with no internet, haha.

So has ANYONE else gone through ANYTHING similar? I feel like SUCH a freak. Like I don't know why they can't find a cause for my seizures.. onder: It really drives me nuts.​

 

[Nancy]

Oh, so sorry!! That really sucks. I was so very fortunate to go right ahead and have those awful seizures in the hospital during VEEGs. .....
BUT the RNs there did tell me that they have had patients who just sat in their beds in total misery waiting for a seizure .... one they EXPECT .... they haven't had MEDS, they have had caffine, light shows - all they things that always cause them seizures.
The patients usually come back and try again as soon as their insurance will allow it.
Best wishes
Enjoy Switzerland - have a great time

 

[Bernard]

Hi Kate, it's good to hear from you again.

Sorry the EEG didn't capture any seizures. It does happen more frequently than you'd think. Some people don't get a good diagnosis (ie. test result) for years.
Something about the change in environment puts you off your normal routine IMO.

Perhaps the next time you feel like you might be in danger of having a seizure, you can close your eyes and envision yourself there at the hospital having your EEG. onder:

 

[Kate]

Thanks for the replies. That's a really good idea.. I would have never thought of that.

I've been looking it up and I guess it is more common than I thought. I felt like I was a rarity or a freak or something, lol. A lot of what made it so hard was being sick and the allergic reactions, plus recovering from surgery.

I have NO idea if they want to repeat one again. I guess we'll see!

 

[CQ:)]

Sorry to hear you didn't get the outcome you wanted with the Video EEG Kate.

Hope you enjoy your trip to Switzerland.